Thursday, April 29, 2010

Paulette O'Leary already had an IV in her arm when the lawyers arrived.

The 41-year-old Toronto doctor and mother of two had flown to Pennsylvania over the weekend to undergo a controversial "liberation" treatment she hoped would alleviate the symptoms of multiple sclerosis that have plagued her for 22 years. On Sunday night, she and her husband went out for dinner on the instructions of the doctor who would perform the surgery – he was so confident it would work, he had instructed her to celebrate.

But on Monday, the same doctor, a vascular radiologist named Joseph Bonn, sat at her bedside at Lankenau Hospital outside Philadelphia and informed her that he had just been ordered by lawyers to cancel her procedure, as well as those of countless other MS patients who had booked his surgery time solid through to October.

"I was in shock, because I was so pumped up," Dr. O'Leary said Wednesdaybefore flying back to Toronto. "It's going to be awful when I arrive back at the airport because my daughter's expecting me to run to her, and she's going to see me still walking with a cane."

Dr. O'Leary, a researcher with the University Health Network in Toronto, had paid $18,000 (U.S.) to be just the fifth MS patient, and first Canadian, to be treated by Dr. Bonn.

Since an Italian vascular surgeon named Paolo Zamboni released a study suggesting MS was connected to chronic cerebrospinal venous insufficiency (CCSVI), patients in Canada and around the world have been desperately seeking out doctors who will perform procedures to unblock their veins.

But in the U.S., hospitals are beginning to ban the procedures for MS patients until more research is done, as fears of legal liabilities surface. Dr. O'Leary and others in the MS community worry that this reluctance will force the treatment underground, with people lying about why they need an angioplasty or paying large amounts to receive the treatment overseas.

"People are willing to mortgage their houses for this," Dr. O'Leary said.

A statement released by Lankenau on Wednesday said that while CCSVI "may offer a breakthrough" in the treatment of MS, the hospital is suspending the unblocking treatments until they are approved by its Institutional Review Board.

In December, Stanford University in California also ordered vascular specialist Michael Dake to stop performing a procedure to open the veins of MS patients. Although many of his patients reported improvements in their symptoms, one woman died of a brain hemorrhage on the way home from the treatment, and another patient required surgery after the stent installed to open his jugular vein broke free and floated into his heart.

Since then, other U.S. doctors who had been quietly performing the procedure – their names spread swiftly by online MS support groups – have been ordered to stop by their legal departments.